Thursday, April 29, 2010

And the Philly Wackys are off and running!

Well, almost - reposted email dated today:

Hello WACKY friends!

I hope this finds everyone well and SUPER excited for the race this weekend! It is amazing how quick time goes and I know that we are ALL ready to go! The email below contains A LOT of information, please review and print so you have all you need for race day and for the WACKY TEAM!! It’s been an honor getting to know all of you and being on this team! Nick arrives on Saturday and looks forward to meeting everyone too!

Race Packets:
Please make sure to pick up your race packets on Friday or Saturday. It is suppose to be BONKERS so get there early. Those of you that I am picking up I will be going at 11am tomorrow! Don’t forget to have safety pins to pin your BIB number on your front that morning. The shoe chip gets put around your laces (for first time runners!)

Dinner Saturday NIGHT:
We will be having our pasta dinner at Primavera’s Pizza Kitchen Saturday, May 1st at 630pm. If you have not RSVP’ed, please let me know.
Primavera Pizza Kitchen
7 East Lancaster Avenue
Ardmore - (610) 642-8000

Meeting Place for START and FINISH:
Getting to the start and back from the finish is up to each of us. It will not be easy but the Broad Street Recommends the following:
Due to the limited amount of parking in the start area, we recommend that runners park their cars for free near the finish area (at the Stadium Complex at Broad & Pattison) and take the Broad Street Line to the start.
To get to the starting line, ride SEPTA for free. ALL RUNNERS CAN RIDE SEPTA'S BROAD STREET SUBWAY LINE FOR FREE by displaying your official race number to the cashier at any Broad Street Line stop. You must be wearing the number on the front of your shirt. Shuttle buses will return you from the finish area back to the parking areas.
It is in your best interest to board the train before 6:30 AM (This should get you to the start area at approximately 7:45 AM). Please allow yourself extra time for any unfortunate delays. The race will begin promptly at 8:30 AM. Schedule times may vary. It takes approximately 35 minutes to reach the SEPTA Broad & Olney Transportation Center, which is a few blocks above the start. SEPTA will also be providing express trains on the morning of the race.
Karen and I scoped out the race the other day and we will meeting at the following places. At the start we will have Brightly Colored balloons and meet at 745AM! We will not have cell phones. At the end, you are welcomed to cheer people on as they come in…however we will also be meeting to celebrate with each other at the statue below. It will also be a good point for family and friends to find you. If you finish early and want to head out that is fine too. We would love to get a final end race picture though! Hopefully they’ll be someone to take a start one too!

We’ll all try to run on the RIGHT side of BROAD ST. (GOING DOWN) if you want to pass on to friends and family of where to stand when cheering. At the beginning, City Hall, and at the End are the best points. Make sure they know to look for the WACKY logo!!

Starting Point 7:45AM:
15th and Somerville Ave (right in front of Girls High Football field)
Look for ESF “A” frame with balloons brightly colored
On the RIGHT if you are looking DOWN Somerville at 15th. One block off of Broad and Up from Olney

End Point (as everyone comes in):
4700 South Broad (in Naval Yard complex) ADDRESS ON BUILDING
Meet in front of Melville Statue ON RIGHT which is directly next to a HUGE naval ship

Shirts….look great and will deliver LATE tomorrow at the ESF Headquarters. They can be picked up here late in the day, at TLC on Saturday, or at the dinner on Saturday night. I will NOT have shirts on Sunday with me! Don’t forget to bring your WACKY attire too…the crazier the better! Wigs, crazy socks, hats, you name it…you can wear it!

We are doing Great! ESF has agreed to match all that has been donated by end of day today, so make sure to let Karen know if you are bringing it to TLC or the dinner. We’ll want to include it in our total amount. We’ll present the check that night at the dinner. Her email, is she’ll add you in if you email her by 5 with the amount! Remember we asked for $20 to run on our team and then if you chose to raise or put in more.

WACKY Runners: Some chickened out but the rest remain…Drum Roll….
Michael Rouse Mary Franco Ross T. Maureen Fox
Karen Fox Melissa Williams Jocylen T. Ryan Carney
Pete McHale Mike T. Lisa Caesar Meghan Baker
Lyndsey Horan Lori T. Dani Mezzino Tony Childress
Lee Brower Bridget Polly Medved Dan Mcdermott
Nicholas Pulos Mike Morris Kristen Medved Kathryn Mcdermott
Jonathan Trenkle Gina Feliciani Jen Stayden Michael Barron
Shane Hostetter Elizabeth Becker Josh Stayden Joe Zimmerman

Last Minute:
Don’t forget to hydrate ALL day on Saturday and up to 2 hours before the race! See Hal Higdon site for nutritional and hydration tips.

My cell is 610-496-4994 for any last minute questions!

Good Luck! I am so exciting to be on this team and this journey with all of you!

Smiles and a HUGE good luck HUG,
Dani 

Danielle Mezzino
ESF Dream Camp Philadelphia
750 E. Haverford Rd.
Bryn Mawr, PA 19010
610-581-0100, ext. 215
610-496-4994 (Cell)

Tuesday, April 27, 2010

What is Rhabdomyosarcoma?

We have had a few newbies join the rhabdo-list (online support group) and this question has come up. One of the supporters, James Atkinson, is particularly knowledgable and explained it as follows:

Alveolar Rhabdomyosarcoma exhibits genetic translocations either between t(2;13)(q35;q14) or t(1;13)(p36;q14).

The former generates the fusion gene PAX3 -FOX01, which account for around 60% of ARMS cases.

The latter generates the fusion gene PAX7 - FOXO1, which account for around 20% of ARMS cases.

The protein generated by these fusion genes is unique in the body and might end up providing a target for future vaccine therapies.

Embryonal Rhabdomyosarcoma does not have recurrent structural chromosome rearrangements, but rather has frequent chromosome gains and losses. In addition, ERMS has a much higher frequency of loss of one of the two alleles of many chromosome 11 loci, particularly in the 11p15.5 region.


These genetic abnormalities occur in the cells themselves, presumably in immature muscle cells -- rhabdomyoblasts -- that have not yet matured into 'real' muscle cells. Under the microscope, rhabdomyosarcoma cells can resemble fetal muscle cells.

These genetic abnormalities are *not* part of the genome and cannot (so far as we know) be passed from parent to offspring. Children likely are not born with a predisposition to rhabdomyosarcoma unless they have some other genetic condition, like P53 knockout, that can lead to tumor development.
Rhabdo genetic errors very likely are just accidents.

I note in passing that the rhabdomyoblast theory does not account for adults like my wife who acquired rhabdomyosarcoma in adulthood, when presumably all rhabdomyoblasts have matured. There is a school of research that suggests that mature muscle cells can revert to immature blasts under as-yet-unknown conditions.

If researchers can figure out that precise mechanism, we should understand RMS genesis for most patients much better...and be able to craft new treatments to leverage that new understanding.

When prompted to restate in a manner that an 87-year old grandfather could understand, James posted again with:

Twitter version: Two genes get transposed in muscle cells. Bad things happen.

As I've mentioned before, alveolar rhabdo (ARMS) is more agressive than embryonal (ERMS).

And there ya go.


Friday, April 23, 2010


As we are in full swing preparing for the Philly Broad Street Run on May 2nd and the Ogden Marathon on May 15th, I feel it is important to emphasize as to WHY we are raising money. The following link - was written by Mary Sorens about funding for childhood cancers and advocating sarcoma-specific research and services. This is very informative and validates our efforts in support of CureSearch.

On another note,the following editorial -
- discusses some startling facts about the American Cancer Society. I am very disappointed in the facts stated here, however Relay for Life was one of the best experiences I have had relating to ALL cancers. Last year we did not raise money for the event itself, with the exception of the luminary bags. I would partipate again based soley on the luminary ceremony - a very tender, emotional tribute to EVERYONE associated with cancer in EVERY situation - those that have passed, those newly diagnosed, those still fighting, those who are caregivers, those that support.

We dedicate our fundraisers specifically for CureSearch and First Descents, but I feel the Relay for Life allows me to embrace the emotional bond we all have with cancer. Someday, maybe we can incorporate our own event combining all intentions. Someday, maybe cancer will be eradicated and fundraising won't be necessary.

Love Lori

Thursday, April 8, 2010


It's time to get ! Nick's Warriors are out in full force in two major events:

We believe this event has already sold out. There is a team hosted by ESF Dream Camp out of Bryn Mawr, PA. They are actively training and raising money through pledges (go to If you have any questions or would like to come and support their effort, please contact Dani Mezzino at ESF Dream Camp, 610-581-0100, ext 215 or email her at Lee Brower will be running with the ESF team with Lori Brower and Nick Raitt there to support the effort!

Please go here ( for the current roster of those participating in the Ogden Marathon, Half Marathon and 5k. There is a column for registering with the Ogden event and another for registering with Nick's Warriors. Donating $30 and registering with Nick's Warriors includes participation in the pre-event dinner on Friday, May 14th from 5:00 p.m. to 7:00 p.m. The dinner will be held at the Hilton Garden Inn (Davis Conference Center) - 762 W. Heritage Park Blvd (1651 N. 700 W.) We will enjoy a carb-filled dinner, show a short movie from First Descents, hand out tee shirts and embrace the reason we are all participating in this event. Please confirm your attendance to the pre-event dinner, if you haven't already, and go here for the Nick's Warriors registration link ( The marathon and half marathon are sold out; however, there is still room for 5k runners (please go here for Ogden 5K registration link -

There is still plenty of time to get pledges for donations (go here for pledge form - Tim Kvech from Maryland has already raised over $5,000!

We are also having a contest for both races to whoever has the ist costume/hat while running! Please be sure to take a picture of your favorite runner and we'll vote after the race!

For those that are interested, the Hilton Garden Inn located in Layton, Utah, has affordable rooms ($79/night) and is centrally located for shopping and restaurants. I have reserved a few rooms under “Empowered Wealth Foundation”, but you'll need to call 801-416-8899 and make your reservations by April 30th. Also, since the majority of us are in the 5K and the starting time is 7:00 a.m., we have made arrangements to have a bus pick us up at the Hilton Garden Inn at 6:00 a.m. We'll provide juice, bagels, etc. for the ride up. We can have the bus take those that want to go back early return to the hotel (time to be determined). Many may wish to go have breakfast near the finish line while we wait for our marathoners to run in!

Tuesday, April 6, 2010

Ascorbic Acid

We have done some extensive research on ascorbic acid via iv therapy (massive doses of vitamin c) and Nick has chosen to proceed with this treatment. To quote from a PNAS paper dated September 20, 2005, Vol 102, No. 38 - "Our data show that ascorbic acid selectively killed cancer but not normal cells, using concentrations that could only be achieved by iv administration and conditions that reflect potential clinical use. Ascorbate administered iv is likely to be safe in most patients, with virtually no toxicity compared to most currently available cancer chemotherapy agents." - communicated by J.E. Rall, National Institutes of health, Bethesda, MD, August 2, 2005. Obviously, the written research is extensive, but this gives you the nutshell version. We are fortunate to have a clinic near us that can administer the ascorbate and Nick had his first treatment yesterday. We sat down with the doctor and she review Nick's blood results (before treatment):

Nick is just a little bit low in his red and white cell count; that's ok and expected after the brutal chemo treatment he went through. What she has never seen before is that he has ZERO candida antibodies; usually candida is rampant in patients having undergone chemo and radiation. In addition, his heart is in excellent shape (so the red devil, aka doxorubicin, didn't affect his heart) and there is no indication WHATSOEVER of any hidden inflamation (cancers cells busy munching away at his healthy cells). His albumin levels are perfect (albumin is the protein that covers the cell walls and low levels may indicate cancerous activity). She feels there are no indicators of cancerous activity in Nick's body. He is a healthy, normal 21-year old young man. Had she seen his file and not know his background, she wouldn't have known he ever had cancer. His vitamin d levels are low but he is boosting his body with supplement drops. Between the ascorbic acid (adminstered once a week) and vitamin d drops, he is ramping up his immune system so his own body can keep the cancer cells at bay. She did some other tests and we have a very clear and concise baseline to watch and compare. Now we should be able to spot cancer activity in the very beginning of cell malfunction rather than have to wait for a tumor to be found on a scan.

I am extremely grateful for his decision to be proactive in maintaining his health. Within the past 4 weeks, four rhabdo warriors have earned their angel wings - all young adults! We also lost our dear friend, Lisa, last month. It has been a heartbreaking month to say the least. With this in mind, Nick's Warriors are out in force and will be participating in both the Philadelphia Broad Street Run on May 1st and the Ogden Marathon on May 15th. An annoucement with details will be posted tomorrow.

Please pray for another rhabdo warrior - David Buck (his mom's name is Lori, too). He is also 21 and he and his family could use your support.

Thank you, everyone! I'm truly on bended knees giving thanks for Nick's miraculous health. Please join Nick's Warriors in our efforts to eradicate cancer and empower young adult cancer survivors!